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Phantom pain

Phantom pain is pain that feels like it's coming from a body part that's no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these real sensations originate in the spinal cord and brain.

Although phantom pain occurs most often in people who've had an arm or leg removed, the disorder may also occur after surgeries to remove other body parts, such as the breast, penis, eye or tongue.

For some people, phantom pain gets better over time without treatment. For others, managing phantom pain can be challenging. You and your doctor can work together to treat phantom pain effectively with medication or other therapies.

Symptoms
Causes
Risk factors
Prevention

Most people who've had a limb removed report that it sometimes feels as if the amputated limb is still there. This painless phenomenon, known as phantom limb sensation, may rarely occur in people who were born without limbs.

Phantom limb sensations may include feelings of coldness, warmth, or itchiness or tingling — but should not be confused with phantom pain. Similarly, pain from the remaining stump of an amputated limb is not phantom pain. By definition, phantom pain feels as if the pain comes from a body part that no longer remains.

Characteristics of phantom pain include:

Onset within the first few days of amputation

Comes and goes or is continuous

Often affects the part of the limb farthest from the body, such as the foot of an amputated leg

May be described as shooting, stabbing, boring, squeezing, throbbing or burning

Sometimes feels as if the phantom part is forced into an uncomfortable position

May be triggered by pressure on the remaining part of the limb or emotional stress

Related

Because phantom sensation and phantom pain are common after an amputation, it's likely your doctor will ask you about these symptoms during follow-up visits after your surgery. If you develop pain from the amputated limb before your doctor raises the issue, call your doctor. Depending on the severity of your symptoms and on your response to initial treatments, your doctor may refer you to a specialized pain center.

What you can do

Write down your symptoms, including when you first noticed them and how often they occur. Also note whether anything in particular seems to trigger phantom pain.

Make a list of your key medical information, including any other conditions with which you've been diagnosed and the names of any medications, vitamins and supplements you're taking.

Take a family member or friend along, if possible. Sometimes it can be difficult to recall all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.

Write down questions to ask your doctor. Creating your list of questions in advance can help you make the most of your time with your doctor.

For phantom pain, some basic questions to ask your doctor include:

What pain relief therapies do you recommend?

If you're prescribing medications, what are the possible side effects?

Is there any risk of becoming dependent on or addicted to these drugs?

Given that I have these other health conditions, how can I best manage them together?

Are the treatments you're suggesting likely to be covered by insurance?

Am I a candidate for clinical trials?

Should I see a specialist?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask any other questions that arise.

Although there's no medical test to diagnose phantom pain, doctors can identify the condition by collecting information about your symptoms and the circumstances, such as trauma or surgery, which occurred before the pain started.

Describing your pain precisely can help your doctor pinpoint your problem. Even though it's common to have phantom pain and stump pain at the same time, treatments for these two problems may differ.

Finding a treatment to relieve your phantom pain can be difficult. Doctors usually begin with medications and then may add noninvasive therapies, such as acupuncture or transcutaneous electrical nerve stimulation (TENS).

More-invasive options include injections or implanted devices. Surgery is done only as a last resort.

Medications

Although no medications specifically for phantom pain exist, some drugs designed to treat other conditions have been helpful in relieving nerve pain.

No single drug works for everyone, and not everyone benefits from medications. You may need to try different medications to find one that works for you.

These drugs work by modifying chemical messengers that relay pain signals. Antidepressants may also help you sleep, which can make you feel better.

Possible side effects include sleepiness, dry mouth, blurred vision, weight gain, and a decrease in sexual performance or desire.

Anticonvulsants. Epilepsy drugs — such as gabapentin (Gralise, Neurontin), pregabalin (Lyrica) and carbamazepine (Carbatrol, Epitol, Tegretol) — are often used to treat nerve pain. They work by quieting damaged nerves to slow or prevent uncontrolled pain signals.

Side effects may include depression, anxiety, suicidal thoughts, irritability, and allergic reactions such as hives, fever and swelling.

Narcotics. Opioid medications, such as codeine and morphine, may be an option for some people. Taken in appropriate doses under your doctor's direction, they may help control phantom pain.

However, you may not be able to take them if you have a history of substance abuse. Even if you don't have a history of substance abuse, these drugs can cause many side effects, including constipation, nausea, vomiting or sedation.

N-methyl-d-aspartate (NMDA) receptor antagonists. This class of anesthetics works by binding to the NMDA receptors on the brain's nerve cells and blocking the activity of glutamate, a protein that plays a large role in relaying nerve signals.

In studies, NMDA receptor antagonists ketamine and dextromethorphan were effective in relieving phantom pain. Side effects of ketamine include mild sedation, hallucinations or loss of consciousness. No side effects were reported from the use of dextromethorphan.

Noninvasive therapies

As with medications, treating phantom pain with noninvasive therapies is a matter of trial and observation. The following techniques may relieve phantom pain:

Nerve stimulation. In a procedure called transcutaneous electrical nerve stimulation (TENS), a device sends a weak electrical current via adhesive patches on the skin near the area of pain. This may interrupt or mask pain signals, preventing them from reaching your brain.

Used properly, TENS is safe. To avoid an unintentional shock, don't wear a TENS device in the shower or tub or turn it up too high.

Mirror box. This device contains mirrors that make it look like an amputated limb exists. The mirror box has two openings — one for the intact limb and one for the stump.

The person then performs symmetrical exercises, while watching the intact limb move and imagining that he or she is actually observing the missing limb moving. Studies have found that this exercise may help relieve phantom pain.

Acupuncture. The National Institutes of Health has found that acupuncture can be an effective treatment for some types of chronic pain. In acupuncture, the practitioner inserts extremely fine, sterilized stainless steel needles into the skin at specific points on the body.

It's thought that acupuncture stimulates your central nervous system to release the body's natural pain-relieving endorphins. Acupuncture is generally considered safe when performed correctly.

Minimally invasive therapies

Injection. Sometimes injecting pain-killing medications — local anesthetics, steroids or both — into the stump can provide relief of phantom limb pain.

Nerve blocks. This method uses medications that interrupt pain messages between the brain and the site of the phantom pain.

Surgery

Surgery may be an option if other treatments haven't helped. Surgical options include:

Brain stimulation. Deep brain stimulation and motor cortex stimulation are similar to spinal cord stimulation except that the current is delivered within the brain. A surgeon uses a magnetic resonance imaging (MRI) scan to position the electrodes correctly.

Although the data are still limited, brain stimulation appears to be a promising option in selected individuals.

Stump revision or neurectomy. If phantom pain is triggered by nerve irritation in the stump, surgical resection or revision can sometimes be helpful. But cutting nerves also carries the risk of making the pain worse.

On the horizon

Newer approaches to relieve phantom pain include virtual reality goggles. The computer program for the goggles mirrors the person's intact limb, so it looks like there's been no amputation. The person then moves his or her virtual limb around to accomplish various tasks, such as batting away a ball hanging in midair.

Although this technique has been tested on only a few people, it appears to help relieve phantom pain.

You may not have control over whether you develop phantom pain after surgery, but you can reduce your discomfort and improve your quality of life. One or more of these approaches may help you get through a flare-up of phantom pain:

Look for distractions. Find activities that take your focus off the pain, such as reading or listening to music.

Stay physically active. Get your exercise by doing activities that you enjoy, such as gardening, walking, swimming or cycling.

Take your medications. Follow your doctor's directions in taking prescribed and over-the-counter pain medications. If you try herbal and other alternative medications, be sure to tell your doctor.

Find ways to relax. Practice activities that reduce your emotional and muscular tension. Take a warm bath — not too hot, as heat may aggravate the pain. Lie down and follow helpful relaxation techniques, such as rhythmic breathing, meditation or visualization.

Seek the support of other people. Find ways to get closer to others. Call friends, or join a support group or a group involved in your favorite hobby.

Take care of your stump. Removing or putting on your prosthesis, massaging the stump, and applying TENS, cold or heat may reduce the pain.

Remember that managing phantom pain can make a big difference in how you feel. If one approach doesn't provide relief, try something else rather than give up.

Learning to live without a limb, especially if you have phantom pain, can be challenging. Depression often accompanies pain. You may find it helpful to talk to a counselor or therapist.

An in-person or online support group can put you in touch with others who know what you're going through. To find support, ask your doctor for a referral, either to a counselor or to a support group.

You also can contact the Amputee Coalition at www.amputee-coalition.org for information on its National Peer Network, which can put you in touch with a variety of support services, including its Peer Visitor Program. This program can connect you with someone who’s been in your place and can talk to you about healing, share his or her experiences and offer advice.